Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Posts Tagged ‘Ehlers-Danlos’

"Pain can be endured and defeated only if it is embraced. Denied or feared, it grows." ~Koontz

Written by Katie. Posted in Prolotherapy

Monday, I had round 4 of prolotherapy.  As I was getting ready to leave for Mishawaka, my friend Ila called to see if I was still coming because it was snowing.  Yes, SNOWING on April 18th. 

Sidenote:  Every time I have had prolo, it has snowed.  When I made my April 18th appointment, I made the comment to the receptionist, “Well, at least I won’t have to worry about snow by then.”  Mother Nature sure showed me. 

Five For Friday 4/15/11

Written by Katie. Posted in Five For Friday

After a big week last week of Bob Seger and Philly, I knew I had to lay pretty low this week…Sunday and Monday I was a mess, but by Tuesday I was feeling a lot more human.  Hopefully these five won’t bore you to tears…Especially since I have only a couple of pictures.  Everything on my computer was wiped out yesterday.  I still don’t know why.  Sighhhhhhhhhhhhhhh…

1.  Medical Stuff: 

  • 2 days of PT.  Circuit work and elliptical work.  I tried to do the recumbent bike yesterday but I was “taching” too much (heart rate too high) so I had to stop.  At least I got in a good amount of strengthening before the POTS attack hit.
  • 2 days of home rehab.
  • I had my monthly appointment with Larry.  I turned in my Apollo 13 assignment, we talked about where I am at with my goals/progress, what to discuss with Dr. Cantieri on Monday and Dr. Grubb’s NP on Wednesday, and we figured out a plan for my continuing physical therapy.
  • After going over my sources of pain, we realized that EDS is affecting my jaw.  It keeps popping and subluxing, giving me some of my neck and jaw pain.  I am to wear my mouth guard more, and watch it.  If it gets too bad, I can be referred to a doctor who only works on TMJ problems.  I have also heard you can have prolotherapy on your jaw.  Hmmm… 
  • Larry wrote me a prescription for a new pain med cream I had to have made at the compound pharmacy to help with spasms; especially in my neck (since I HATE taking muscle relaxers).  He also wrote me a prescription for open toe compression stockings!
  • The good news about open toe stockings?  They are open toe.  The bad news about open toe stockings?  They only come in opaque, not sheer like my other ones.  I guess beggars can’t be choosers, right?  I am still waiting for them to come in the mail.

A++

Written by Katie. Posted in Ehlers-Danlos Awareness, Favorites, My Creations, Other Appointments, POTS Awareness

If you recall a while back, at my last monthly appointment with Larry (Sports Med doc and the “captain” of my medical team), I was given an old fashioned homework assignment.  After having a mental breakdown in his office, he gave me this task…To watch Apollo 13, and relate it to my EDS and POTS by creating any craft project I want.  All he told me was he wanted me to pay attention to the energy conservation theme. 

I watched the movie on Monday (yes, I had a whole month and procrastinated until the day before just like the old days) and ended up taking 6 pages of notes.  It took me 4 hours to watch the 2.5 hour movie because I kept rewinding to make sure I had info, space lingo, and quotes correct.  Then I went to work on my “crafting.” 

Wake Up Call

Written by Katie. Posted in Challenges, Favorites, Music

Sometimes you need a wake up call.  Usually I try not to whine about the little things that get me down about EDS and POTS, but yesterday I failed at this. Big time.

It was 84 degrees and sunny yesterday.  In all other years I would have been ecstatic about this weather; especially on April 10th.  I would have broken out my Reef flip flops and capris, and spent as much time as I could outside reading, relaxing, and soaking up some rays.  I would have also probably have gone and gotten my first pedicure of the season. 

But not yesterday.  I whined and complained all day.  I even got on MY nerves after a while.